“I have bad news.” My niece Rebecca tells me. Every Sunday, Rebecca and I have long, intimate phone conversations. This morning she hesitates, is upset.
“What my chiropractor and I have been treating as sciatica turns out to be bone cancer.”
We remain silent. This is a dejá vu for me. My sister Lotte, 36 years ago, at age 56—Rebecca’s age—made a similar call to me. At that time I was the mediator in the family—the only one my sister would talk to.
I try to regain my composure and ask Rebecca, “Did you have a scan?”
“Yes, last Monday.”
“Where is the primary?”
“Probably lung. A bone biopsy is scheduled for this week.”
“Do you want me to come?” We live at different ends of the country, but visit each other once or twice a year.
Rebecca pauses, ambivalent, “I don’t think so. If I change my mind I’ll let you know.” We share a few more minutes of chatter.
“I love you. Call and keep me informed.”
“I will. I love you too.” We hang up. I am fighting tears. Damn, why does this have to happen to Rebecca? She has two teenage sons, a recent job promotion; she is too young to die.
At the end of that conversation with Rebecca, I clearly recall a Sunday morning in June many years ago. My sister Lotte phoned from New York,
“I have tuberculosis, what do you think I should do?” I am a doctor and did not accept that diagnosis.
“Come out on the next plane to Indianapolis and bring your x-rays.”
Lotte, a chain smoker, had inoperable lung cancer. I felt the same anger at my sister’s diagnosis three decades ago as I do today at Rebecca’s. To accommodate Lotte, my family converted our attached garage into a cozy efficiency apartment. My sister stayed with us until she died. Her son and daughter, Rebecca, rarely came to visit her. They were busy at college and had a tumultuous relationship with their mother, who had an overwhelming need to be in control of her own and her children’s lives. She not only told them what to wear and eat, when to sleep and wake up, but also what feelings to express and what emotions to suppress. She would get angry, her temper would explode, if they voiced an opinion that differed from her own. Lotte aimed demeaning remarks at her youngsters. She was an expert at put-downs.
After her mother’s death, Rebecca joined my family during school breaks. We resembled each other and people often assumed we were mother and daughter. We liked that and joked that life for Rebecca might have been easier if that had been true. We enjoyed each other’s company. I loved her. Once released from my sister’s tight control, our relationship flourished. The loss of that control also allowed my niece and nephew to rebel against society, to join protest marches and to dress like hippies.
I also remember my sister Lotte’s relationship with our mother. It was as troubled as her relationship with her daughter Rebecca. Lotte told me before she died that she remembered sitting at her desk as a youngster, looking out the window, and our mother yelling at her, “Do your homework. All you do is daydream. You are so lazy.”
Those daily battles are a painful part of my childhood memory. Today my sister would be called dyslexic instead of lazy.
Lotte did not allow our mother to visit until she was near death, and then only let her cut her toenails, nothing more. I see Mother, as she sat erect, dressed in her tan, checked traveling suit, on the edge of Lotte’s bed. She was holding Lotte’s foot on a white towel in her lap, nail clippers in her hand. After two days Lotte asked Mother to leave.
Our mother did not return until after Lotte’s death.
Rebecca calls me, “The biopsy shows adenocarcinoma of the lung. I am in the hospital for pain control.”
Again I ask “Do you want me, or any of us, to come?”
The answer, “No, thank you, maybe later, I have lots of friends.”
Indeed, she does have many good friends, because she has an effervescent personality and a good sense of humor. She is bright and successful. Her job interviews almost always result in offers of employment, although at work she feels harassed by female colleagues and supervisors. Her recent opportunity to start in a responsible, new managerial position is erased now by her diagnosis. Her friends come to be with her in her need. With them she is not reminded of her past. She can keep her resentful feelings about her mother suppressed and direct her anger about dying at me, her aunt, who is far away. I admit to assuming that Rebecca wants me to come. I am the only family member who is not working, the only one who has known and loved her since her birth. I am presumptuous, however, in this. Rebecca does not want me to stay with her, which makes me jealous of her friends.
Later, I receive a Sunday morning call, “Hi, how are you? My friend has to have surgery and won’t be able to stay with me next week. Can you come?”
I respond, “Yes, I can. Let me check on flights. Do you need anything?”
“I need some new nightgowns. Mine are icky, disgusting.”
I send her three nightgowns. I misjudged. The gowns represent physical contact with me that she wants to avoid. She does not try them on, but has her friend return them to the store unopened and buy a different set.
Before we end our conversation Rebecca adds, “If you do come, I don’t want you to touch me. I just want you to be a grandmother.”
A strange remark, since she usually describes me as her substitute mother who parents her more than her biologic mother ever did.
At her house, inevitably, I help her to get dressed, shower, and complete other tasks she can no longer do by herself. Before her illness the shade and style of her hair, from one visit with her beautician to the next were, unpredictable. Now she is bald. She was always a careful and impeccable dresser preferring subdued colors, black or brown, with a matching scarf to emphasize her expressive eyes. Today she is wearing an old T-shirt and sweat pants. I kneel on the floor in her bedroom to help her put on her socks.
She gets angry, “Don’t put the left sock on first, do the right.”
She is angry, angry at the loss of her independence, the loss of control over her life and her body. As her illness progresses, I watch her holding the same tight rein over her sons, making the same demeaning remarks that she experienced from her mother.
She queries her eighteen year old, “Where are you going? Take your blue coat, not the brown one. Do you have money for the subway? When will you be back?”
Her sons avoid coming to her house. They don’t like to be told how to behave, nor to be ridiculed for shedding tears. When the older of the two sobs after his mother finishes vomiting and lies in bed moaning, she tells him, “Crocodile tears won’t help the pain.”
Rebecca is in terrible pain and tries acupuncture and reflexology without relief. Each day is worse than the day before.
She tells me, “Go home, there are too many people here, I need more quiet.” Less than five minutes later she calls her friend to come over for the day.
I ask her, “What makes you so uncomfortable in my presence?”
“It feels as if you are mothering me.”
“What do you mean?”
“It feels as if you are my mother and I don’t want, I don’t need a mother.”
I do not, will not push her to say more. She has two professional women talking with her, her therapist and the Rabbi. I do not want to intrude. I want to avoid an angry confrontation such as she had with the hospice counselor when she told him not to return. I imagine she thinks, “I don’t want you near me because your presence at my mother’s death is a constant reminder of what is ahead of me and makes me afraid.” I decide it is wise to endure the anger directed at me and continue our relationship because I cherish and love Rebecca.
My being a doctor also makes Rebecca fearful.
She says, “I don’t want any negative comments about my treatment. I think because you are a doctor you are more pessimistic than I am.”
I leave that challenge unanswered, but am aware that, at times, she wants me to erase my medical background, at other times to use it.
During another phone call Rebecca says, “I have a medical question.”
I listen to her problem and try to reinforce what her doctor recommends for constipation. To keep quiet about her medical care is difficult for me. Rebecca is not slender she enjoys exotic foods and likes to cook. Early in her illness her appetite is still brisk, she gobbles the favorite delicacies her friends bring her. When she returns from one of her doctor appointments disheartened, I ask, “What did you find out?”
“He told me to lose weight, stop eating.”
The doctor in me almost blurts out, “Why spoil the enjoyment you get from food at this time in your life? What difference will it make? Idiotic!” but I say nothing because Rebecca does not want to hear negative comments from me about her doctors or their advice.
I leave Rebecca’s home and ponder whether I can help her. I want to respect her feelings but I am baffled. ‘Mothering’ is unwelcome to her. She calls me her substitute mother but I do not think of myself as Rebecca’s mother, do not look on her as my daughter. Could Rebecca accept loving care from me if her relationship with Lotte, her mother, had been more supportive? Is her anger stirred principally by the anticipation of her death or by her continued, lifelong search for the mother she never had? Her illness makes me reluctant to speak openly. She misinterprets what I say.
She calls me at my home and asks, “What are you doing this afternoon?”
I tell her, “It is beautiful and sunny out, I think I’ll go for a short walk.”
Her answer, “Well, you don’t have to rub it in that you can walk and I can’t.”
I feel guilty for not being more thoughtful. I become guarded in my comments just when she needs closeness most. When we talk, I fill in with the weather report. I am afraid anything more may cut off communication altogether. Before Rebecca’s illness our telephone conversations were unencumbered and included requests for advice about her job, her friends, and her sons. We would talk about medical and money problems. She rarely followed my suggestions, but she might say, “Talking to you helps me think and see different sides of an issue.” Now we are much more constricted in our exchanges.
Does my presence diminish her, make her feel childlike? I suspect that her physical dependence, due to her cancer, awakens those feelings and causes her to merge my image with Lotte’s. We never talk about Lotte. Rebecca does not want me to mention her name. All her life she has tried to eradicate her anger with, and resentment of, her mother. Now, in her extremity, she is upset that she needs and wants loving care. She does not dare to accept that kind of care from me, because it will feel as if she has failed in her effort to blot out my sister’s influence.
As her disease, her disability worsen, we hire strangers to stay with her. I am sad that I cannot participate in her care, that I can express my love for her only via daily phone calls.
I ask, “Hi, Rebecca. Were you able to sleep with the new dilaudid prescription?”
“Yes, better. The pain is not gone, but less acute.”
“How are the boys?”
“They are hiding from me.”
We talk about her nurses, the election, but never about my coming back to be with her. Rebecca, in contrast to Lotte, does not want me, cannot tolerate me, to take care of her.
She calls Thanksgiving day, “Hi, it smells great here. Twelve of my friends each brought a favorite dish. The table is beautiful and we are having a good time laughing, hugging, and reminiscing.”
Many times during the past months I question whether Rebecca loves me. I need to believe her when she tells me on the phone that she does. That my family and I are excluded from the Thanksgiving celebration, however, makes me marvel at the strength of Rebecca’s rage.
During Rebecca’s last telephone conversation with me she says, “I want you to come Wednesday evening, stay Thursday, and leave Thursday night.”
I am surprised. Travel eleven hours each way and stay only one day? I go, but Rebecca has lapsed into a coma before I arrive. I never speak with her again and return home wondering why she wanted me to come. To talk? To say good-bye?
Later the family gathers for Rebecca’s memorial service. Once again I undertake that long day of travel, this time not alone, my daughter and granddaughter are with me. My younger sister picks us up at the airport and during breakfast shows us the obituary which Rebecca dictated to her brother before she died. Several friends are named as having been left behind, but other than her two sons and brother, no relatives. Silently I question why her substitute mother, her aunts, and cousins are excluded, as if we do not exist.
We leave Rebecca’s house and drive to the temple for the service. I try hard to stay calm, not to cry. I want to shed my tears in private. I don’t like to display my mourning in public. The Rabbi speaks well, but she elevates Rebecca with praise above reality by saying, “She accepted that her life was ending without bitterness.”
Dylan Thomas’s admonition describes her dying better: “Do not go gently into that good night.” The Cantor’s sonorous voice laments. The old Hebrew melodies bring me close to tears. Music speaks directly to my feelings. The melody of the Kaddish–the prayer for the dead–calls forth memories of those I have known and loved who have died: my parents, my sister, aunts and cousins. Now Rebecca is one of them.
There are many of Rebecca’s friends at the temple and later at the house. Rebecca would have liked the tone of the gathering. There is laughter as well as weeping, stories that friends tell of how they met Rebecca and how they became friends. One lady, whose home is in England, tells me she always went shopping with Rebecca because of her talent to find bargains. Many tell me that Rebecca often mentioned me in their conversations and explained to them that I am her substitute mother.
My family leaves Rebecca’s house late at night. There still are guests at the house. As a family physician I am well aware of the genetic illness that may afflict several generations of one family. To be aware of and understand how behavior is mirrored from one generation to the next, I can look at the last four generations of my own family. Mother-child relationships can be described as very difficult between my mother and my sister Lotte, my sister and my niece Rebecca, my niece and her sons. I understand why Rebecca wanted no ‘mothering’ but it makes me feel forlorn and sad.
I treasure and often read the note Rebecca left for me when she first learned of her diagnosis. It confirms her love for me and makes it easier to tolerate the anger she directed at me,
“I am sitting here thinking of a list of things to thank you for, but the list goes back to my childhood (and likely even before I was born) so I think a simple thank you for everything will have to cover a lifetime of gifts. Thank you. I love you with all my heart.”
Back home, I continue to wait for Rebecca’s calls, continue to have the impulse to call her. It takes time to rewire the brain. I cry at odd and unexpected moments and think about Rebecca in the daytime and in my dreams say Kaddish for her.